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Letter from my sister

I didn't want this post to get mixed up in with my other Christmas stuff, because it truly deserves a post of its own. My 14 year old sister, Callie, wrote the most amazing thing and wrapped it up as my Christmas Present. She had a school project where she had to write about her most influential person, and she chose me. What? I was flabbergast to say the least. As I read the title, then began to read on and saw my name...the tears began to flow. I don't know how I made it through reading it all because the more I read the more I cried. The sweet words were so pure and heartfelt.

*Pardon the messy hair, it was Christmas morning...and the puffy eyes, I was crying ;)

Since the picture is hard to read, I had Callie send me it so I could include on my blog:

My Influential Person

By: Callie Barthelemy

Checkups, vests, pills, more health precautions everyday. Caston, enzymes, and more medicine than I can count. Coughing up mucus, getting winded easily, setbacks that would break down a normal person. Running 5K’s, taking bike rides, pushing through your disease. Graduating college, getting married, reaching your 9 year anniversary, living your dreams before it’s too late. These are things my sister has to go through as I watch her live her life to the fullest while I can’t do anything to make time go any slower. My sister Dana is 32 years old and is living with Cystic Fibrosis, otherwise known as CF. It’s a hereditary disorder where your mucus is very thick and it gets into your lungs and other intestines often making it very hard to breathe. Dana has such a big impact on my life. I watch her living her life to the fullest, making every day count, and taking every opportunity given to her. She has the best attitude toward life and takes nothing for granted. If you asked me when I was five years old where I wanted to be when I was 32 I would say some childish thing like I wanted to be a fairy princess, a childish dream that has no real meaning. But as I’ve grown older and I watch what Dana has gone through, that dream has changed.

Having CF means that you have to take care of your body. This means eating healthy, working out, and doing all of your treatments. Remember that awful feeling when you’re sick and you won’t stop coughing? My sisters lived with that for the past 32 years. My sister has a blog called cf stinks and on there she has a bucket list. Crossed out on there is to run a 5K. Luckily, I got to do this with her. I’ve never been a big fan of running but this was something that I would be able to do with her since I don’t see her that often. So we got up early in the morning and drove to the 5K where a lot of people were preparing for the long run ahead. I could tell as we drove up that this is what she loved. We ran and ran so that finally the finish line was near. When she crossed, I saw that look again. She knew she had done something great that most people without a disease can’t even do. I was so proud that I had a sister that can live her dreams, and I was glad that I got to do it with her.

CF is a scary thing to live with. Dana has great opportunities where cameramen follow her around for a day, so others can see the daily life of someone with CF. At the end of her video, Dana says, “I hope one day there’s a pill that I can take and I won’t have CF anymore and I hope that I can live to see that day.” I want her to see that day too. I want her to be healthy and I want her to stay around for a long time. Her influence on me has been greater than anyone else’s could have ever been. She teaches me how to love and care for people and she teaches me to never give up. She doesn’t realize she teaches me these lessons of life. Maybe she doesn’t realize that I cherish every second I’m with her, never knowing if it will be my last. So if you ask me where I want to be when I’m 32, I’ll tell you that I want to be sitting here, reading this with my healthy 50 year old sister Dana.

I wish I had the words to express what she means to me. All I can say is, I can't wait to sit down with her when she is 32 and read it together :) Love you, Cal!!!

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About Me

I am 34 years old, living with Cystic Fibrosis. I was diagnosed when I was a year old and only weighed 14 lbs. I am very fortunate, as my FEV1 scores are generally in the 90s (if not higher). I am pancreatic insufficient, so I take 5-6 enzymes with meals and 3-4 with snacks. My genotype is DF508/621+1G-T. My sputum cultures Pseudomonas which leads me to take Zithromax 3 times per week. Additionally, I am Osteopenic, so I take calcuim supplements and Fosamax. Will and I have been married for 11 years and have three adorable English Bulldogs, Stella, Sarge and T-Bone. I currently don't have a "real job", but running the house is full time work, plus I help my husband with book keeping for our businesses. I try to stay busy by spending time with family and friends as well as traveling and exercising.